Newborn Screening For Krabbe Disease
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How far would you go to save a child's life? You can start here with signing this petition for Newborn Sreening for the genetic disease Krabbe. Krabbe is a gentic disease also known as globoid cell leukodystrophy is normally fatal before the age of two and has a average rate of death of 13 months.Krabbe is an inherited,progressive,non-selective disorder that effects the brain,spinal cord and peripheral nerves.1 in 125 people are carriers of krabbe.It is passed by both mother and father.It is not determined by gender.Any children conceived by carrier parents have a chance of being affected.One in 40,000 children in the United States are afflicted with krabbe disease.Yet awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.Now,a new and revolutionary treatment,Cord Blood Transplant,is saving the lives of many sick,young children and babies.Early diagnosis is imperative.Since krabbe disease hits early,and is quickly fatal it is critically important that a diagnosis be made promptly at birth.We have to make Newborn Screening a must for krabbe disease and give our children a bright and shiney chance for the future.
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